Life certainly has many ups and downs. Physically and emotionally, all the circumstances we encounter will impact us and those around us.
One of the major upheavals that folks encounter is cancer. The multiple forms of cancer, the uncontrolled growth of cells that negatively affect the normal physiology of the body, can be localized or spread to multiple areas. The local effects or more generalized effects from spread will take a potentially devastating toll on our bodies and, by extension, affect our psyches. Our health and ability to function is usually compromised, and our family dynamics will be altered as we adjust to these changes. And one of the greatest concerns in the battle with cancer is an earlier death than would otherwise be expected.
Yet, great advances are being made all the time, with all forms of cancer. In my lifetime, childhood leukemia changed from almost universally fatal to largely treatable. Adult-onset cancers are also seeing dramatic changes. Breast cancer death rates have fallen by 44% since 1989.
Why have survival rates changed? Because of research! Research has led to enhanced methods of detection, allowing for intervention before advanced spread occurs. Research has led to changes in surgical interventions, radiation therapies and chemotherapies. Research is the mainstay of cancer care and the only way that we can continue to advance our cancer management. Research is also leading the way for cancer-preventing interventions, like the HPV vaccine. This latter vaccine now offers a clear path to a dramatic reduction in cancers associated with the HPV virus.
Almost daily on the news (or in our personal lives) we will hear stories of folks that have “beat” cancer and get to ring the bell in the cancer clinic. What a jubilant time for those folks and their families. I must admit I get very emotional when I see or hear about such events.
But not everyone gets to ring the bell. Too many people succumb to their cancer before they ever get the opportunity to ring the bell and continue their life “after cancer.” As a pediatrician, I have encountered numerous children who do not get to ring the bell. In a mind-boggling 24-hour period back in 1978, I cared for a newly diagnosed child with leukemia who died quite suddenly, and then I celebrated the birth of my oldest son later that day. The see-sawing emotions taught me to never take anything for granted going forward.
So, we can celebrate when children and their family ring the bell but what do we do when they are unable to ring the bell, passing on before all the benefits of modern medicine can extend their lives? I submit that we do far too little to support the families when this happens. This situation is highly emotionally charged and needs an incredible sensitivity that can be difficult to apply. By and large, the health care system tends to leave these families to fend for themselves when, in fact, their needs are even greater than before.
When families have been unable to ring the bell, there can be lingering effects that last for an extended period. The surviving siblings (or cousins) and the adults should be treated with dignity and respect, using language that is developmentally appropriate, culturally appropriate and faith appropriate for the children and the family.
I would emphasize two guiding principles – listening and being present. It is so important to be open to listening to our children. They might say things that don’t make sense (since they do not know how to process all of their emotions or the emotions of others), but please let them express themselves. And when they are talking (or not talking), it is important for us to be present. Being present means that you are paying attention to them, cell phone down, TV off and engaged when having a conversation. Being present means that you recognize potential lingering effects and are willing to address them in a sensitive manner.
Some additional things to consider include—
- Be willing to discuss the situation with an open mind and heart. The ability to share in the grief or anguish is so important for the child to know that they are not alone.
- Anticipate that there might be some guilt or shame. For reasons that we don’t understand, children might feel that they had something to do with the recent death. They might feel that something that they did or didn’t do possibly contributed.
- Anticipate changes in family dynamics. Everyone will deal with grief in different ways and certain family members will be affected more deeply than others.
- Sibling dynamics will often change. As the children deal with the emotional issues differently, minor daily stresses might lead to emotional flare-ups, especially those that seem to be out of nowhere. Make sure that the lines of communication are always open.
- When necessary, seek professional assistance. Feel free to discuss these issues with your pediatrician. If they are concerned, professional counseling might be of great benefit and should be sought.
- Just because the child (or children) seem to be ok doesn’t mean that everything is fine. Be open to asking questions that might give you a window into their thoughts and emotions. You are not putting thoughts into their head when you do that. You are showing empathy and nurturing in a proactive way.
- Recognize that the parents and other adults in the extended family are under stress also. Be sure to practice self-care during these difficult times. Seek support and assistance as needed.
It is estimated that 1 in 20 children will suffer from the death of a parent by age 16, and of course, many will lose other close relatives. It is incumbent upon all of us to be prepared for these difficult times. We should never be dismissive of the emotions of our children. Listen and be present and let them understand that you support them as the family deals with this situation together.
Research is crucial to our continued quest to cure cancer and its related effects. We are currently under an attack on cancer research that is unprecedented and incredibly harmful. The current assault will negatively affect all of us and our families. It should not be tolerated.
Ringing the bell is a time of great joy for cancer patients and families. Yet, not being able to ring the bell should not be a time of withdrawal of our commitment to families affected by cancer. Our work has just begun and can be so helpful for families dealing with the tragedy of death. Our connections with them can be the lifeline that they need. Let’s help them ring a different bell – the bell of human triumph in the midst of great sadness. That can be our greatest gift to them and to the memory of their loved one.